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Coronavirus Pandemic Huntington’s NSW ACT response

We will need a plan “B” WORDS LEWIS  KAPLAN

coronavirus

While this article will probably be way out of date by the time it reaches you, I wanted to give you a sense of what your association is looking at over the next few weeks and months.

First and foremost, we must take extra care, given we work with particularly vulnerable members of society. We have decided we must implement an even more cautious approach than the general public, so closed down all our group activities on 17 March as advised on our web-site and Facebook page.

First and foremost, we must take extra care, given we work with particularly vulnerable members of society.

The Board and staff have created a business continuity plan for the association. We are watching public health advisories closely, and have postponed all our group activities, such as support groups, art and music therapy program. Where possible, online alternatives such as teleconferences will be implemented.

Like many other smaller charities and businesses, the next few weeks and months will be very challenging, so any extra support we can receive from government and the community will be most welcome.

We are creating a Plan B for Walk for hope in case the pandemic still obliges us not to hold large gatherings six months from now.

Unfortunately, many of the events that raise money for vital Huntington’s support services have either been cancelled or postponed. together, we must still continue to provide what support services we can. so, if you are able, please consider making a donation, as if you were still attending a fundraising event  https://huntingtonsnsw.secure.force.com/causeican/Donate/2019.

We have also closed the association’s offices at the West Ryde office. staff have the capacity to work from home, so as much as possible it’s business as usual, with lots more video-conferences, phone calls and emails. Front-line services for NDis participants and Youth Program clients continue to be available remotely.

Latest News and Stories

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We are recruiting – Youth Services Practitioner

Published date: 20 March, 2023

Huntington’s NSW ACT provides services and advocacy to improve the lives of people impacted by Huntington’s disease (HD). The HD Youth Services Practitioner supports achievement of Huntington’s NSW ACT’s strategic objectives by providing counselling and other tools to improve the mental health of children and young people at risk of Huntington’s disease, and/or living with a parent or carer, or family member affected by or at risk of developing HD.

Ailsa’s Legacy – HD Education Scholarship

Published date: 17 March, 2023

We are excited to announce that applications for the 2023 Ailsa’s Legacy Youth Scholarships are now open and invite all children and young people in our HD community needing assistance to start, continue, or return to education in 2023 to apply. We have a number of individual grants available this year of up to $2000 each for children and young people living with an HD affected parent or carer. These grants can be spent on anything that makes accessing education easier and more likely such as course or school fees, uniforms and shoes, computers, IT and software, school camps, school sports, extra tuition, extracurricular activities, transport, accommodation, and more.
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NAA pre-budget submission for the 2023-24 Federal Budget

Published date: 6 March, 2023

The Neurological Alliance Australia * (NAA) is pleased to provide a pre-Budget submission to the Australian Government for the 2023-2024 Budget. This submission focusses on four key areas that will impact people affected by the conditions represented by the members of the NAA.

HD Heroes book release

Published date: 6 March, 2023

Huntington’s Disease Heroes includes stories from a scientist who switched from cancer research to studying Huntington’s after finding out her mother had tested positive for the disease, a young man whose biggest fear was testing gene negative and not inheriting the disease, and a woman who grew up in survival mode, unable to express her grief. We learn about the ways their lives are better off because of the hardships they have faced. By sharing these intimate parts of their lives, they are taking away the fear and stigma of living with Huntington’s in their families. They are giving a voice to this unheard rare disease community and empowering others to speak up.
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We are recruiting – Support Services Administrator

Published date: 2 February, 2023

We have created a new position for an enthusiastic and committed person wanting to be part of an inclusive and supportive team in a growing NDIS specialist business and specialised programs, supporting people living with Huntington’s disease (HD) and their families. In this part-time role you will be responsible for providing administration support to a ... Read more

CEO announcement for Huntington’s Australia

Published date: 16 January, 2023

Following the recent announcement about State Association memberships agreeing to proceed with a national merger, Huntington’s Australia (HA) has appointed a new CEO to lead the new association. Lenni Duffield, from Huntington’s WA, has been unanimously endorsed by the HA Board as the inaugural CEO of Huntington’s Australia. Lenni has held senior roles and provided ... Read more